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Rare Disorders
Select a Rare Disorders Subcategories
Aicardi Syndrome Moyamoya
Alström Syndrome Pemphigus
Barth Syndrome Phenylketonuria
Cystinosis Pierre Robin Syndrome
Degos Progeria
Erythromelalgia Rubinstein-Taybi Syndrome
Melorheostosis Wegeners Granulomatosis
Rare Disorders Listings :
XLH Network
Patient support group for XLH, a genetic condition also known as X-Linked Hypophosphatemia, X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets.
Cherubs
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
Contact a Family
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
Lymphangiomatosis and Gorham's Vanishing Bone Disease
Provides general information and a personal account, including pictures and X-rays.
Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
 
 
 
 
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